Because thyroid eye disease (TED) targets the tissues behind and around your eyes, symptoms of TED directly relate to your eyes. Eyelid retraction (malpositioned eyelids) is a complication of TED that can interfere with your appearance, comfort, and, in some cases, vision.1
Understanding the normal function of your eyelids, how TED can affect them, and treatment options can better equip you for navigating this common complication.
Function and structure of your eyelids
The upper and lower eyelids are moveable structures made of tissue and muscle. The upper eyelid is larger and moves more freely. Inside the eyelids are meibomian glands that secrete the oily substance that makes up the tears.2
The eyelids serve various functions, including:2
- Distributing the tears over the surface of the eye to keep it moist and refreshed
- Protecting the eye from injury
- Limiting the amount of light entering the eye
How TED affects the eyelids
TED is an autoimmune disease that affects the muscles and tissues around and behind the eye. Autoimmune diseases occur when the body’s immune system mistakes healthy tissue for invaders like germs. In TED, the immune system attacks, damages, and sometimes destroy the tissue around the eye.1,3
TED often impacts the muscles of the eyelids, making them swollen and stiff. Eventually, the hardened muscles lose normal function. As a result, the eyelids pull back or retract, making it hard or even impossible to blink or close the eyes.4
If you cannot fully close your eyes, the surface of your eye becomes dry and irritated. Dry eye symptoms worsen when the eyes bulge or protrude forward in the eye socket. This is also a common symptom of TED.4
Symptoms
Symptoms of eyelid retraction relate to the irritation caused when the eyelids are unable to properly close. Eyelid retraction causes the eye to be wide open, and the lid moves away from the eyes. The retraction is often more noticeable on the outer edge of the eyelid (lateral flare). Other symptoms of eyelid retraction include:4
- Irritation or a gritty feeling of the eyes
- Excessive tearing
- Vision problems, including double or blurred vision
- Sensitivity to light (photophobia)
Treatment
Over-the-counter lubricating eye drops can help relieve symptoms of dry eye related to eyelid retraction. Your doctor or TED specialist can help you find the right eye drop for you. If you cannot close your eyes, you might need a gel formula to keep your eyes moist and refreshed.5
Strong anti-inflammatory drugs called steroids might be needed if your eyes and eye tissue are swollen. These are usually prescribed at a higher dose and slowly tapered to avoid complications.5,6
New disease-modifying treatments might help to stop inflammation. For example, tepezzaⓇ (teprotumumab) is the first U.S. Food and Drug Administration (FDA)-approved drug to treat TED. It works by blocking a receptor in the body known to cause the symptoms of TED. Talk to your doctor about the risks and benefits of this type of treatment.5,7
Some people need surgery to treat eyelid retraction related to TED. Because inflammation and swelling continue in the active (acute) phase, surgery is reserved for the inactive (chronic phase). This means that eyelid repositioning surgery is used to correct and repair the damage done in the active phase. Goals of this surgery include:5
- Returning the eyelids to a natural position
- Improving the cosmetic appearance of your eyes
- Decreasing dry eye symptoms
Malpositioned eyelids can occur with thyroid eye disease, though it is not something you have to live with forever. Treatment is available and varies depending on the phase and severity of TED. Talk to your TED specialist about what treatment is best for you and how you can better manage your symptoms.